Wednesday, 16 October 2013

Greetings from the North American Cystic Fibrosis Conference

This week sees the 27th Annual North American Cystic Fibrosis Conference take place in Salt Lake City, Utah and we've sent three delegates to represent the Cystic Fibrosis Trust and on the world stage. Over the week we'll be posting various blogs rounding up the many interesting things which happening over in the US, starting today with this update from Cystic Fibrosis Chief Executive Ed Owen.

The home of the Mormons, Salt Lake City is the
venue for this year’s North American Cystic Fibrosis Conference organised by the
Cystic Fibrosis Foundation.

More than 4,000 people from
scientific research, clinical care, industry and groups representing people with
cystic fibrosis are arriving from across the world to discuss the latest
developments in drug discovery, medical practice and wider
research.

I am here with Janet Allen, the
Trust’s Director of Research, and Elaine Gunn, our Registry Manager – and,
although it’s a long way to come (it took us 15 hours to get here from the
UK!), it is worth it. Many of the
contacts and much of the vital information we need to enhance the Trust’s
research and clinical work are here – and we will be spending every possible
hour seeking them out for the benefit of people of cystic
fibrosis.

Although the meeting does not
officially open until later today, we have already had a very good meeting with
Bruce Marshall, the Cystic Fibrosis Foundation’s clinical director, to discuss peer review,
registry and wider clinical issues – and, yesterday evening, we met up with the
Cystic Fibrosis Foundation’s President, Bob Beall, and his number two, Preston
Campbell.

The Cystic Fibrosis Foundation has led the way in the
US charity sector in acting as an
engine for new drugs and treatments. The Vertex small molecule pipeline,
including Kalydeco, was made possible because of its seed-funding through the
2000s.

We have much to learn from our
American colleagues as we improve our performance and impact – and it was very
useful to catch up and hear their latest plans. We were able to tell Bob and
Preston of the key research projects we are
funding and to explore areas of future cooperation.

International collaboration is a
must if we are to deliver real benefits to people with cystic fibrosis in the
UK. We will be playing our part this
week and beyond.

We will also be updating you on
meetings and interesting facts and insights that come from the conference
through the week. But goodbye from SLC for now!

Follow Ed over on Twitter for live updates from the conference at @Ed_Owen. Don't worry if you miss any due to the seven hour time difference, we will be retweeting Ed over on our own Twitter @cftrust in during UK office hours.